Frustration

[jaxem]

recently returned from Univ. Minnesota-Fairview MC where my wife underwent 4 days of pre-admission tests which was quite extensive. they are a well organized team that has just completed their 5000 BMT. the nurse who performed a BM Biopsy on my wife had stated she had done 600 biopsies since last Dec. My wife said she was VERY good. Unfortunately my wife failed the biopsy test yielding 8% blasts. she was last tested several months ago and was at 2% after which she had 3 additional rounds of dacogen. she had just come off rehab from a bout with pneumonia with the remnants appearing in a CT scan which concerned them also. she is trying to get a cord blood transplant but their protocol requires less than 5% blasts. we are back home now going through more treatment to get below that maximum.

[jas174]

Sorry for your frustration. You have waited a long time. Did they give you a time frame to the next testing for the blasts? My husband is in the planning stages of a reduced intensity transplant, possibly cord. He has had many treatments in the past year with no response. He is now trans. dependent- weekly for RBC and every 2-3 days for platelets. His blasts in blood are very high, but a BMB 2 wks. ago showed no increase in marrow since the last one a few months ago.(about 10%) but the fibrosis has increased. I have gained much information from your posts, you are so well informed. I guess we are also waiting, waiting. All the best to you and your wife. Husband 61,MDS 9/06. Vidaza worked for 6 months, then dacogen, danazol, revlimid etc. no response. now, RAEB2 + WAITING

[jaxem]

jas174
sorry about what you are going through with your husband & lack of response from drugs. has your husband ever gone through a standard chemo protocol such as MEC? I assume you do not have a donor if you’re considering cord transplant.

my wife is scheduled to start her treatment on tuesday. we were thinking dacogen + MS-275 HDAC inhibitor but MS-275 in on study hold for a few weeks. rather than lose time waiting, we decided on trying dacogen + valproic acid, another HDAC inhibitor which used to be used for mental patients but has shown some promise for mds patients. The treatment needs to be done in hospital as valproic acid is known to cause confusion. like you say, try, wait & bmb! my wife has had a dozen or so bmb’s in the 2 years she’s had this disease & it breaks my heart every time.

[jas174]

Hope you managed to have a good Thanksgiving. When so much is going on with loved ones, it’s difficult to count blessings. I realize that I am grateful that a transplant is possible since it wasn’t just a few years ago. There are 2 matches for my DH, an 11 out of 12 (The Dr. says it’s do-able) and a cord (He says it’s a big cord, would be ideal, more matching there to be done) What treatment is your wife having to bring the blasts down? His blasts in blood have been 40-68, but the latest BMB showed blasts in marrow of just below 20%. Confuses me. My DH had non-hodgkins lymphoma a few years back, had big time chemo then, also exposed to agent orange in Vietnam for 2 tours. His MDS is secondary. Dec. 13th we go to the big city for consultation and a plan. Do you have a “sort of” date for the transplant for your wife? And, yes, it’s heartbreaking…I am a “glass half full” person…drives him nuts! When his port got infected and he had to get IV antibiotics just before Thanksgiving, I casually said…”Well, that’s good…we won’t worry about you catching something from our company”. Later, I thought, I am really beyond help! Jas174(:-) Husband 61,MDS 9/06. Vidaza worked for 6 months, then dacogen, danazol, revlimid etc. no response. now, RAEB2 + WAITING, WAITING.

[Mary4Mike]

Jack,

I have been keeping up with what is going on with your wife…I am sorry to hear about her latest blast count. Is that the reason valproic acid is being added to Dacogen…to bring the blast count down or does it just boost the effectiveness of the Dacogen? Also, is this a FDA approved treatment or is it still in the clinical stage? The reason I am asking is that our doctor won’t do any treatment that isn’t approved. I don’t know if it has to do with insurance or what. How long of a stay will your wife have in the hospital? Hopefully, not long.

Sending you and your wife good thoughts and prayers,

[jaxem]

jas/mary
my wife is currently in the hospital getting a lower dose of dacogen with a high dose of valproic acid in order to get blasts down, get this, from 8% to below 5%. Seems trivial to me but per the protocol at Univ. Minnesota. They say it won’t work if blasts are above. The dacogen + VA is per an approved protocol established at MD Anderson and is not experimental or a trial. Your doc should be well aware if he is keeping up with the rapid advancement in treatment chemos. It’s a bit complicated what the VA does but essentially inhibits a process that dacogen creates making the overall combination more effective. There are other HDAC inhibitors that are in use like MS-275 and CDOG 0103. Which is the most effective, they don’t know. wanted to do dacogen with MS-275 but that’s been placed on “study hold” for several weeks. We don’t want to wait. Seems stupid to a layman like me to expose a patient to more chemo toxicity to reduce 3% blast level. I am about to research other good cord tx institutions but really wanted Minnesota to do it. Stupid protocols but really have their act together.

[Mary4Mike]

Jack,

I really hear your frustration. Perhaps the stringent protocols are a big part of the success they are experiencing. It would be interesting to know if other good cord tx instutions that aren’t as strict are having the same rate of success..(?).

How long will your wife have to stay in the hospital? How is she doing?

On a different note, I went on MD Anderson’s web site. A lot of good info to take in. Thanks for your help.

All our best to you both.

[cherylm]

Hi Mary,

You may want to check out the MDS clinical trials list at the National Cancer Institute’s website. Maybe you can find a worthwhile trial for your husband.

Cheryl

[jas174]

Jack, How is your wife doing? She and my husband are going through similar things now. He has been told to report to the Boston hospital in the morning and plan to stay. Dr. said he is converting to leukemia and has another infection (Number 6 in 9 weeks). They said bring stuff and plan to stay. We have been waiting for the go ahead for a bone marrow transplant, he will have induction chemo now and the rest is unknown. I know you are not a fortune teller, but can you tell me what to (maybe)expect as to how long the stay could possibly be, how sick will it make him and what can I do for him? Will he be in isolation? I am terrified for him and overwhelmed at the same time. Now he and your wife are both in my prayers. Jas174 —————————————————————Husband 61,MDS 9/06. Vidaza worked for 6 months, then dacogen, danazol, revlimid etc. no response. now, RAEB2 + WAITING, WAITING, now is transforming to leukemia

[maueenh]

Joy,

I am so sorry to hear that your husband is not doing well. If they think he has converted to leukemia then there are several new/different treatment options.
There are many on this site who have gone through induction chemo with flying colors so stay positive. Where is he being treated in Boston?

You are all in my prayers.
Maureen

[jaxem]

jas
whatever they choose for his induction chemo, hopefully it will stem the tide. the chemo will probably kill the fast growing cells in his body such as hair and GI issues but he’ll get over that. hopefully they’ll be no other issues to cope with such as being nauseous and he can proceed to “consolidation” chemo to further knock the $!#’in blasts down. Hard to predict how each person does with induction/consolidation chemo as everyone is different. They’ll do a BMB to see where his blasts are, then start the transplant process which will probably include chemo such as fludaribine, then autoimmune drug(s). I assume he’ll be having a “mini” transplant which limits the eradication of his own cells, and you have a donor. I believe the induction & consolidation chemos are about a week each. after a suitable recoup period, about a week is required for the pre-transplant chemo/drugs. the transplant should keep him in the hospital for about a month until he starts growing T cells and his counts start to rise. having never gone through a transplant process and really only read about it, this is my best guess about a typical transplant process. Maybe another member who has gone through it will take you through what they have gone through. good luck with your husband. I wish him good health.

[jas174]

Maureen, Jack, Thank you for the response and info. He is being treated by Dr. Miller at Tufts New England Med Ctr. It’s about a 90 minute drive. Jack, hope your wife is doing well with the treatment. How are YOU? Is it a long trip to the hospital? Dr. here said first thing to do is redo everything for current info. His blood shows a blast count of 68! This admission was not really for the BMB, which was in the planning stages, but for an infection and the port seems to be the source. Since nobody there gives difinite answers, I will assume that when all test info is back, then a plan will be evident. Jack, Thank you for the explanation, I will not panic at each step knowing (sort of) the procedure. They are very good to him there, no complaints. Day by day is all we can do and try not to lose hope. Easier said than done. Thank you for the prayers and well wishes..of course, Right back at you! Jas (:-) ——————————————————————————-Husband 61,MDS 9/06. Vidaza worked for 6 months, then dacogen, danazol, revlimid etc. no response. now, RAEB2 + WAITING, WAITING.

[jas174]

Well, it seems after a bone marrow biopsy at N.E.M.C.

[jas174]

I must have hit the wrong key…what I meant to write, was that he has transformed to leukemia and after doing numerous tests, a CT scan showed “spots” on his liver, so a biopsy was done for that, fevers continue, his echo shows some heart damage from previous chemo and crackles in his lungs. None of these things were diagnosed at our local Oncologists clinic. The last I was told, the plan is Chemo and the transplant is not ruled out for now. I will see the Dr. tomorrow Does anyone have any questions I might ask? Right now, I am very worried and can’t seem to think of anything else but getting back and forth to see him. ————————————————— Husband 61,MDS 9/06. Vidaza worked for 6 months, then dacogen, danazol, revlimid etc. no response. now, 12/07 transformed to leukemia, very high blasts, waiting for a plan and treatment. Praying hard.

[jaxem]

interested in knowing type of chemo planned; what’s wrong with heart (congestive failure, ejection fraction?). praying hard for him, too.

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